Abstract
BackgroundInternational studies indicate deficits in end-of-life care that can lead to distress for patients and their next-of-kin.The aim of the study was to translate and validate the “Care of the Dying Evaluation” (CODE) into German (CODE-GER).MethodsTranslation according to EORTC (European Organisation for Research and Treatment of Cancer) guidelines was followed by data collection to evaluate psychometric properties of CODE-GER. Participants were next-of-kin of patients who had died an expected death in two hospitals. They were invited to participate at least eight, but not later than 16 weeks after the patient’s death. To calculate construct validity, the Palliative care Outcome Scale (POS) was assessed. Difficulty and perceived strain of answering the questionnaire were assessed by a numeric scale (0–10).ResultsOut of 1137 next-of-kin eligible, 317 completed the questionnaire (response rate: 27.9%). Data from 237 main sample participants, 38 interraters and 55 next-of-kin who participated for repeated measurement were analysed. Overall internal consistency, α = 0.86, interrater reliability, ICC (1) = 0.79, and retest-reliability, ICC (1, 2) = 0.85, were good. Convergent validity between POS and CODE-GER, r = −.46, was satisfactory. A principal component analysis with varimax rotation showed a 7-factor solution. Difficulty, M = 2.2; SD ± 2.4, and perceived strain, M = 4.1; SD ± 3.0, of completing the questionnaire were rather low.ConclusionThe results from the present study confirm CODE-GER as a reliable and valid instrument to assess the quality of care of the dying person. More over our study adds value to the original questionnaire by proposing a deepened analysis of obtained data. The development of seven subscales increases its potential for further surveys and research.Trial registrationThis study was registered retrospectively on the 25th of January 2018 at the German Clinical Trials Register (DRKS00013916).
Highlights
International studies indicate deficits in end-of-life care that can lead to distress for patients and their next-of-kin
This study is the first translation and validation of CODETM. in another language. It is the first examination of the construct of CODETM in a different population
The results from the present study offer confirmation that Care of the Dying Evaluation” (CODE)-GER is a reliable and valid instrument
Summary
International studies indicate deficits in end-of-life care that can lead to distress for patients and their next-of-kin. It is important to assess the current state of quality of care (QOC) on these wards, and to identify unmet needs of patients and their next-of-kin. While the patients themselves are often unable to provide information about the perceived quality of their care, their nextof-kin can evaluate the last days of their loved ones [4]. They are providers of support to the patients, and recipients of PC themselves [5]. An instrument which assesses the care given to the patient, and to their next-of-kin, is crucial to represent holistic care at the end of life. QoDD surveys the quality of death and not the quality of care given to the dying patient
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